Resources for Persons with AIDS and their Caregivers

This chapter was developed as a basic reference list of resources for HIV clinicians to help them meet the various needs of persons with AIDS throughout the lifespan. The resources listed are by no means exhaustive or comprehensive, as there is a plethora of relevant literature, Web sites, and interest groups—too many to fit into a single chapter! Instead, this is a set of resources that the authors have found particularly useful when seeking answers to treatment-and social services–related questions at the bedside as well as in ambulatory and community settings. At the time of publication, these resources had been updated regularly and consistently; technology related to HIV evolves on an almost daily basis. A mixture of print and Internet-based resources is provided here—some will be useful to keep in the office setting for perusal or for patients, and some can be obtained on the Internet at a moment’s notice when the need arises. Many of the listings are for Web sites that can aid clinicians in accessing the most current information available on the Internet, which can change almost daily. The sites listed were current as of April 28, 2009. The resources in this section are intended primarily to aid health-care providers in accessing up-to-date answers to questions regarding diagnoses and treatments as well as ethical and legal issues. There are also several sources for patient education materials. While many of these resources are from U.S.-based organizations, much of the information contained within them is applicable in international practice settings. There is also a section related exclusively to population-based and international resources, pertaining to specific ethnic groups or areas outside of the United States. A primary care guideline for the care of persons with HIV is available in print (Aberg et al., 2009) and online and is updated regularly at: http://www.journals.uchicago.edu/page/cid/IDSAguidelines.html. National AIDS Treatment Advocacy Project: http://www.natap.org/ This organization lists upcoming conference and events, articles, and publications.

Palliative and Spiritual Care of Persons with HIV and AIDS

Palliative care of persons with HIV and AIDS has changed over the course of the first three decades of the pandemic. The most radical shifts occurred in the second decade with the introduction of combination antiretroviral therapy and other advances in HIV care. In the United States and throughout the world, progress in prevention of HIV transmission has not kept pace with progress in treatment, thus the population of persons living with AIDS continues to grow. Furthermore, economic, psychiatric, social, and political barriers leave many persons without access to adequate HIV care. As a result, persons who lack access to care may need palliative care for late-stage AIDS while persons with access to AIDS treatments are more likely to need palliative care for multimorbid medical illnesses such as cardiovascular disease, cancer, pulmonary disease, and renal disease. Palliative care of persons with HIV and AIDS cannot be confined to the end of life. We present palliative care on a continuum as part of an effort to alleviate suffering and attend to pain, emotional distress, and existential anxiety during the course of the illness. We will provide guidelines for psychiatric and palliative care and pain management to help persons with AIDS cope better with their illnesses and live their lives to the fullest extent, and minimize pain and suffering for them and their loved ones. This chapter reviews basic concepts and definitions of palliative and spiritual care, as well as the distinct challenges facing clinicians involved in HIV palliative care. Finally, issues such as bereavement, cultural sensitivity, communication, and psychiatric contributions to common physical symptom control are reviewed. The terms palliative care and palliative medicine are often used interchangeably. Modern palliative care has evolved from the hospice movement into a more expansive network of clinical care delivery systems with components of home care and hospital-based services (Butler et al., 1996; Stjernsward and Papallona, 1998). Palliative care must meet the needs of the “whole person,” including the physical, psychological, social, and spiritual aspects of suffering (World Health Organization, 1990).

HIV, AIDS, and Medical Multimorbid Illnesses

Since the introduction of combination antiretroviral therapy, clinicians have seen a sharp decrease in the incidence of many HIV-associated comorbidities, and patients with access and adherence to combination antiretroviral therapy are living longer and healthier lives. However, the frequency of endocrine, metabolic, cardiovascular, renal, dermatological, neoplastic, hepatic, renal, pulmonary, and gastrointestinal multimorbid medical conditions remains very significant and in some cases is increasing. Although the incidence of particular HIV-associated comorbidities such as cytomegalovirus (CMV) retinitis has declined considerably, it remains a significant source of distress and suffering for persons with AIDS. This chapter is not intended to provide a lengthy discourse on each topic addressed, but rather be a general overview that will give the reader a basic working knowledge of multimorbid medical conditions and enhance the understanding of associated psychiatric complications and psychological distress. For a summary of these conditions and their respective features and treatment, see Table 10.1. HIV and AIDS have been associated with a wide spectrum of endocrine abnormalities that underscore the complex relationships between immunological, endocrinological, and psychological systems. Endocrinopathies are great mimickers of psychiatric disorders, manifesting in some cases as disturbances of mood, sleep, appetite, thought process, energy level, or general sense of well-being. Endocrinopathies may present insidiously or abruptly, in either case with potentially tragic consequences when misdiagnosed as psychopathology. Prompt recognition of reversible alterations in endocrine function is essential to prevent unnecessary morbidity and mortality. An understanding of the complex interactions between endocrine and psychological systems may improve recognition and treatment of endocrinopathies, diminish suffering, and enhance quality of life and longevity in persons with HIV and AIDS. Many studies have demonstrated alterations in adrenal function in patients with HIV and AIDS. Associated infections and tumors, as well as direct invasion of the adrenal glands by the virus, partly explain these changes. Patients are also commonly prescribed drugs that alter steroid synthesis or metabolism; for example, ketoconazole decreases steroid synthesis, megesterol acetate suppresses pituitary secretion of corticotropin, and rifampin increases p450 activity, leading to increased metabolism of cortisol.

Symptoms Associated with HIV and AIDS

Many persons with HIV and AIDS have symptoms that are unrelated to underlying psychiatric disorders but may masquerade as such. These symptoms may include insomnia, fatigue, nausea, or other troubling symptoms, and often result in suffering for patients, their families, and loved ones. The symptoms are common throughout the course of HIV and AIDS, from onset of infection to late-stage and end-stage AIDS. They need to be addressed whenever they occur and not only as part of end-of-life care. We present protocols to ameliorate or eliminate these symptoms and alleviate suffering. Fatigue is one of the most prevalent but underreported and undertreated aspects of HIV disease. The prevalence of fatigue in an HIV population has been estimated to affect at least 50% of seropositive individuals (Breitbart et al., 1998) and may affect up to 80% of the population. Darko and colleagues (1992) found that HIV-seropositive individuals were more fatigued, required more sleep and daytime naps, and showed less alert morning functioning than did persons who are HIV-seronegative. While the symptom of fatigue may fluctuate with increasing viral loads, there is no evidence base for a consistent correlation between fatigue and viral load. Fatigue is a pseudo-specific symptom common to a variety of disabilities found in an HIV population, and it has been linked to a variety of other AIDS-related disabilities including pain, anemia, impaired physical function, psychological distress, and depression. Hormonal alterations, such as those in testosterone and thyroxin, that occur in the context of HIV infection are also common in this group. While these findings are further discussed in Chapter 10, it is worth noting here that they can contribute substantially to tiredness and fatigue in this population. Other sources of fatigue include multimorbid chronic illnesses (opportunistic infections and cancers, chronic renal insufficiency, hepatitis C and other hepatic illnesses, and chronic obstructive pulmonary disease [COPD]) and some of their treatments (notably interferon/ribavirin for hepatitis C and cancer chemotherapy). Substances such as recreational drugs, nicotine, and caffeine are also factors in HIV-related fatigue.

Psychopharmacologic Treatment Issues in AIDS Psychiatry

Persons with HIV and AIDS are often prescribed a plethora of medications, all of which require special attention and are based on well-defined principles. In the first part of this chapter, Drug Interaction Principles, we provide a short but essential review of these principles in order to prepare the reader to critically weigh the potential for drug interactions between psychotropics and antiretroviral therapy (ART) and those between ART and other medications. In the second part, Psychotropics and HIV, a brief review of the available literature on the effectiveness of psychotropics in treating patients with HIV is provided, followed by an overview of issues relating to drug interactions for each psychotropic or class of psychotropic. The third part of the chapter, Antiretrovirals, provides an introductory overview of currently available antiretrovirals and of medications prescribed in treating HIV/AIDS. Readers are referred to an excellent review of pharmacological treatment for persons with addictions and HIV/AIDS, by Wynn and colleagues (2005), and to Chapters 2, 6, 8, and 10 of this handbook for more information on treating substance abuse and dependence. Understanding drug–drug interactions in the care of HIV patients is essential. For a full explanation of psychotropic pharmacology and drug interactions, the reader is referred to additional texts on the subject (Cohen and Gorman, 2008; Schatzberg and Nemeroff, 2009; Wynn et al., 2009). Pharmacodynamic interactions are those that occur at the intended receptor site of a medication and involve absorption, distribution, metabolism, and excretion. ART drugs may be affected by timing with food or buffers, which is relatively predictable. Metabolic interactions are a bit more complex, as they are affected by metabolic inhibition, induction, and pharmacogenetics (the particular metabolic enzymes that a patient is born with). Metabolic interactions may occur in either phase I or II metabolic enzymes and also may include the cell membrane transporter enzymes (also known as p-glycoproteins). For a complete explanation of pharmacokinetic interactions, the reader is referred to the text by Wynn et al. (2009).

Strategies for Primary and Secondary Prevention of HIV Transmission

Since HIV disease was first recognized three decades ago, numerous efforts have been made to prevent its continued transmission. The Centers for Disease Control and Prevention (CDC) estimates that more than 56,000 Americans become infected each year—one person every 9 1/2 minutes—and that more than one million people in this country are now living with HIV (CDC, 2008, 2009;Hall et al., 2008). The CDC estimates that roughly 1 in 5 people infected with HIV in the United States is unaware of his or her infection and may be unknowingly transmitting the virus to others (CDC, 2008). Over the past 15 years, many behavioral HIV risk reduction interventions have been developed, with prevention efforts targeting mostly HIV-negative individuals and focusing almost exclusively on HIV testing and counseling. More recently, comprehensive HIV prevention has involved both primary and secondary prevention activities to decrease the number of new HIV infections and associated complications, respectively (Marks et al., 2006; O’Leary and Wolitski, 2009). Psychiatric factors both complicate and perpetuate the HIV pandemic as a result of unsafe sexual practices and substance use disorders. In this chapter, we describe some of the psychiatric and psychodynamic factors that lead to HIV transmission and present novel strategies to assist clinicians and health-care policymakers in prevention efforts. Primary prevention is defined as any activity that reduces the burden of morbidity or mortality from disease; it is to be distinguished from secondary prevention, in which activities are designed to prevent the complications of already existing disease. In the case of HIV, primary prevention efforts focus on strategies designed to prevent the transmission of HIV—keeping seronegative people seronegative. In the HIV pandemic, however, many prevention strategies share characteristics of both primary and secondary efforts, so the distinction is somewhat artificial. Multiple prevention strategies have been devised, and these center around HIV counseling, substance abuse programs, and HIV prevention and intervention programs for children. Counseling healthy pregnant women, uninfected children, adolescents, adults, and older persons about HIV risk reduction and providing information about sexual health are important components to primary prevention strategies, but few physicians and other clinicians actually do this unless it is a part of a program specifically designed to prevent HIV transmission.

Stigma of HIV and AIDS—Psychiatric Aspects

Since 1981, when previously healthy young adults were first stricken with a mysterious illness that was eventually described as “a new acquired cellular immunodeficiency” (Gottlieb et al., 1981), understanding of HIV and AIDS, both the in the medical community and general society, has come a long way. There remains, however, an unfortunate degree of stigma that persists since its development in the early days of the illness (Cohen and Weisman, 1986; Cohen, 1987, 1992; Cohen and Alfonso, 1998;Cohen, 2008). Early in the course of this epidemic, as it became evident that the immune deficiency had an infectious etiology and could lead to rapidly fatal complications, many became fearful of the possibility of contagion. An “epidemic of fear” (Hunter, 1990) thus began to develop along with the AIDS epidemic. During the first decade, even many physicians surveyed had negative attitudes toward persons with HIV and AIDS (Kelly et al., 1987; Thompson, 1987; Wormser and Joline, 1989). At the beginning of the HIV epidemic some persons hospitalized with AIDS experienced difficulty receiving even minimally adequate care, including getting their rooms cleaned, obtaining water or food, and receiving proper medical attention. Psychiatric consultations for AIDS patients with depression, withdrawal, and treatment refusal often revealed the heightened feelings of isolation and depression experienced by the patients, in part as a result of the reactions of staff members to their illness, including the palpable fear of contagion. Holtz and coauthors (1983) were the first to describe the profound withdrawal from human contact as the “sheet sign,” observed when persons with AIDS hid under their sheets and completely covered their faces. Thus, since the beginning of the AIDS epidemic, people with AIDS have been stigmatized. They have felt shunned and ostracized by not only medical caregivers but also the general community and even by their own families and friends. In some areas of the world, persons with AIDS have been quarantined because of the irrational fears, discrimination, and stigma associated with this pandemic. In the United States, persons with AIDS have lost their homes and jobs, and some children and adolescents have been excluded from classrooms.

A Biopsychosocial Approach to Psychiatric Consultation in Persons with HIV and AIDS

For persons with HIV and AIDS, a thorough and comprehensive assessment has far-reaching implications not only for compassionate, competent, and coordinated care but also for adherence to medical treatment and risk reduction, as well as public health. Primary physicians, HIV specialists, as well as psychiatrists and other mental health professionals can play an important role in preventing the spread of HIV infection. Psychiatric disorders are associated with inadequate adherence to risk reduction, medical care, and antiretroviral therapy. While adherence to medical care for most medical illnesses has major meaning to patients, loved ones, and families, adherence to medical care for HIV and AIDS has major implications for reduction of HIV transmission and prevention of emergence of drug-resistant HIV viral strains (Cohen and Chao, 2008). Many persons with HIV and AIDS have psychiatric disorders (Stoff et al., 2004) and can benefit from psychiatric consultation and care. The rates of HIV infection are also higher among persons with serious mental illness (Blank et al., 2002), indicating a bidirectional relationship. Some persons with HIV and AIDS have no psychiatric disorder, while others have a multiplicity of complex psychiatric disorders that are responses to illness or treatments or are associated with HIV/AIDS (such as HIV-associated dementia) or multimorbid medical illnesses and treatments (such as hepatitis C, cirrhosis, end-stage liver disease, HIV nephropathy, end-stage renal disease, anemia, coronary artery disease, and cancer). Persons with HIV and AIDS may also have multimorbid psychiatric disorders that are co-occurring and may be unrelated to HIV (such as posttraumatic stress disorder, or PTSD, schizophrenia, and bipolar disorder). The complexity of AIDS psychiatric consultation is illustrated in an article (Freedman et al., 1994) with the title “Depression, HIV Dementia, Delirium, Posttraumatic Stress Disorder (or All of the Above).” Comprehensive psychiatric evaluations can provide diagnoses, inform treatment, and mitigate anguish, distress, depression, anxiety, and substance use in persons with HIV and AIDS. Furthermore, thorough and comprehensive assessment is crucial because HIV has an affinity for brain and neural tissue and can cause central nervous system (CNS) complications even in healthy seropositive individuals. Because of potential CNS complications as well as the multiplicity of other severe and complex medical illnesses in persons with HIV and AIDS (Huang et al., 2006), every person who is referred for a psychiatric consultation needs a full biopsychosocial evaluation.

Settings and Models of AIDS Psychiatric Care

From primary prevention to end-of-life care, AIDS psychiatry can make significant contributions to preventing risk behaviors and HIV transmission, mitigating suffering, and improving adherence to risk reduction and medical care. Early in the epidemic, stigma and discrimination magnified suffering and excluded persons known to have HIV and AIDS from many settings in the United States and throughout the world. Such treatment of persons with AIDS was described (Cohen, 1989) as a new form of discrimination called “AIDSism.” As we approach the end of the third decade of the HIV pandemic, in most countries education, training, and experience have mitigated AIDSism, and persons with HIV and AIDS are now seen in varieties of medical and nonmedical settings. The multimorbid medical and psychiatric illnesses associated with HIV infection have complicated the care of persons with HIV and AIDS. A primary care guideline for the care of persons with HIV is available in print (Aberg et al., 2009) and online and is updated regularly at: http://www.journals.uchicago.edu/page/cid/IDSAguidelines.html. AIDS psychiatrists, psychosomatic medicine psychiatrists, as well as child, adult, and geriatric psychiatrists and other mental health professionals are in a unique position to intervene and provide both preventive and treatment interventions for children, adolescents, and adults who are vulnerable to, infected with, or affected by HIV infection. Psychiatrists generally make long-term and trusting relationships with their patients and take complete histories including sexual histories and substance use histories. Primary physicians, pediatricians, obstetricians, and HIV specialists as well as parents and teachers may also have unique opportunities to intervene throughout the life cycle. In this chapter, we provide a list of settings where educational opportunities abound and can lead to an improved understanding of how to prevent HIV transmission. These settings are summarized in Table 1.1. Since a full description of every setting with potential for intervention is beyond the scope of this chapter, we provide more specific descriptions of settings where providing education and easy access to testing, condoms, and drug and alcohol treatment can be therapeutic and lifesaving.

A Biopsychosocial Approach to Treatment

The care of persons with HIV and AIDS presents clinicians, caregivers, families, and loved ones with special biopsychosocial challenges posed by the infectious nature of HIV, the specific modes of HIV transmission, the particular way HIV affects the brain, the age of onset, and the complex stigma of HIV. These challenges differentiate AIDS from other severe and complex illnesses, causes, have significant clinical and public health implications, and necessitate early recognition and treatment. The multifactorial nature of these challenges is summarized in Table 11.1, and some unique aspects of AIDS are briefly summarized in Table 11.2. AIDS psychiatrists, psychosomatic medicine psychiatrists, physicians trained in both medicine and psychiatry, and other mental health clinicians can play a vital role the care of persons with HIV and AIDS, in the prevention of HIV transmission, and in training of other clinicians to alleviate distress, reduce ongoing high-risk behavior and nonadherence, provide support for patients and families, and improve patients’ quality of life. In this chapter, we will review the biopsychosocial aspects of AIDS and suggest strategies to address the unique challenges of this devastating and complex illness. Although the AIDS epidemic was first described in the medical literature in 1981, it was not until 1983 that the first articles were published about the psychosocial or psychiatric aspects of AIDS. The first article was not written by a psychiatrist. This article, written by Holtz and colleagues (1983), was essentially a plea for attention to the psychosocial aspects of AIDS. They stated that “noticeably absent in the flurry of publications about the current epidemic of acquired immune deficiency syndrome (AIDS) is reference to the psychosocial impact of this devastating new syndrome.” The authors deplored ostracism of persons with AIDS by both their families and their medical systems of care. These authors were the first to describe the profound withdrawal from human contact as the “sheet sign” observed when a person with AIDS drew a bed sheet over his or her face and head, essentially withdrawing and hiding from visitors.